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The Parenting Journey of Mothers of Young Adults with Multiple Impairments

  • Joyce Magill-Evans
  • Johanna Darrah
  • Nancy L. Galambos
Original Article

Abstract

Parenting children with cerebral palsy can impact parental health and life satisfaction but few studies have addressed parenting a young adult with multiple impairments. This mixed methods study examined 21 mothers’ well being at 2 time points; when their child with cerebral palsy was 13–22 years old and when their child was 20–30 years old. Scores on three questionnaires indicated that, on average, mothers’ life satisfaction, social support, and perceptions of family functioning did not change significantly between assessment points. Six mothers reported low life satisfaction at both time points. Qualitative analysis of semi-structured interviews at Time 2 revealed that 15 mothers reported physical and/or emotional health challenges as a result of the parenting demands. Their work choices were also affected. For most mothers, their experiences of parenting young adults with extensive impairments had influenced their views of disability, themselves, and life in a positive manner.

Keywords

Cerebral palsy Multiple impairments Young adulthood Mothers Quality of life 

Notes

Acknowledgements

The study was funded by Alberta Heritage Foundation for Medical Research and Canadian Institutes for Health Research (CIHR). Johanna Darrah was funded by a New Investigator award from CIHR. We thank the mothers who gave of their precious free time to share their insights with us.

References

  1. Almey, M. (2007). (2007, April 20). Women in Canada: Work chapter updates. Ottawa: Statistics Canada. Retrieved from http://www.statcan.gc.ca/pub/89f0133x/89f0133x2006000-eng.htm
  2. Arnold, P., & Chapman, M. (1992). Self-esteem, aspirations and expectations of adolescents with physical disabilities. Developmental Medicine and Child Neurology, 34, 97–102.PubMedCrossRefGoogle Scholar
  3. Brehaut, J., Kohen, D., Raina, P., Walter, S., Russell, D., Swinton, M., et al. (2004). The health of primary caregivers of children with cerebral palsy: How does it compare with that of other Canadian caregivers? Pediatrics, 114(2), e182–e191.PubMedCrossRefGoogle Scholar
  4. Burton, P., Lethbridge, L., & Phipps, S. (2008). Mothering children with disabilities and chronic conditions: long-term implications for self-reported health. Canadian Public Policy, 34(3), 359–378.CrossRefGoogle Scholar
  5. Chubon, R. A. (1999). Manual for the life situation survey. Columbia: School of Medicine.Google Scholar
  6. Darrah, J., Magill-Evans, J., & Adkins, R. (2002). How well are we doing? Families with adolescents or young adults with cerebral palsy share their perceptions of service delivery. Disability and Rehabilitation, 24, 542–549.PubMedCrossRefGoogle Scholar
  7. Davis, E., Shelly, A., Waters, E., Boyd, R., Cook, K., & Davern, M. (2009). The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child: Care, Health, and Development, 36(1), 63–73.CrossRefGoogle Scholar
  8. Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster family assessment device. Journal of Marital and Family Therapy, 9(2), 171–180.CrossRefGoogle Scholar
  9. Fischer, M. Q., & Corcoran, K. (1994). Measures for clinical practice: A source book (2nd ed.). New York: Free.Google Scholar
  10. Green, S. (2007). “We’re tired, not sad”: benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64, 150–163.CrossRefGoogle Scholar
  11. Hirose, T., & Ueda, R. (1990). Long-term follow-up study of cerebral palsy children and coping behaviour of parents. Journal of Advanced Nursing, 13, 762–770.CrossRefGoogle Scholar
  12. Kabacoff, R., Miller, I., Bishop, D., Epstein, N., & Keinter, G. (1990). A psychometric study of the McMaster Family Assessment Device in psychiatric, medical, and nonclinical samples. Journal of Family Psychology, 3(4), 431–439.Google Scholar
  13. Magill-Evans, J., Darrah, J., Pain, K., Adkins, R., & Kratochvil, M. (2001). Families with adolescents and young adults with cerebral palsy—the same as other families? Developmental Medicine and Child Neurology, 43, 466–472.PubMedCrossRefGoogle Scholar
  14. Miller, I., Ryan, C., Keitner, G., Bishop, D., & Epstein, N. (2000). The McMaster approach to families: theory, assessment, treatment, and research. Journal of Family Therapy, 22(2), 168–189.CrossRefGoogle Scholar
  15. NVivo6 qualitative data analysis software; QSR International, Version 6, 2002.Google Scholar
  16. Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., & Galuppi, B. (1997). Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine and Child Neurology, 39, 214–223.PubMedCrossRefGoogle Scholar
  17. Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S., Russell, D., et al. (2005). The health and well-being of caregivers of children cerebral palsy. Pediatrics, 115, e626–e636.PubMedCrossRefGoogle Scholar
  18. Rentinck, I. C., Ketelaar, M., Jongmans, M., & Gorter, J. (2006). Parents of children with cerebral palsy: a review of factors related to the process of adaptation. Child: Care, health, and development, 33(2), 161–169.CrossRefGoogle Scholar
  19. Statistics Canada. (2008). Participation and activity limitation survey 2006: families of children with disabilities in Canada-Catalogue no. 89-628-X-No. 009. Ottawa, ON: Author.Google Scholar
  20. Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The multidimensional scale of perceived social support. Journal of Personality Assessment, 52(1), 30–41.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2010

Authors and Affiliations

  • Joyce Magill-Evans
    • 1
  • Johanna Darrah
    • 2
  • Nancy L. Galambos
    • 3
  1. 1.Department of Occupational TherapyUniversity of AlbertaEdmontonCanada
  2. 2.Department of Physical TherapyUniversity of AlbertaEdmontonCanada
  3. 3.Department of PsychologyUniversity of AlbertaEdmontonCanada

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